Batten Awareness Day – 31st March

23 Mar

Next Monday is National Batten Awareness Day. A huge thank you to my lovely friend Mille for spreading the word on 3AW this morning and for the tie-in story on Gardening Australia which will go to air next Saturday night at 6:30pm on ABC.  I would encourage everyone to watch this heartbreaking and moving story of a grandmother, who lost her two granddaughters to the disease, opening up her garden to raise money for Batten research. This inspirational lady has raised over $25,000 for the organisation.

This year, we are keeping pretty quiet. The 30th March marks the 4 month anniversary of our loss and emotions are very much all over the place. It isn’t really getting any easier. Truth be told, often it feels like it is harder. The further away we get from the 30th November 2013,  the further away we get from holding her, kissing her, having her here.

I found this wonderful video the other day, another demonstration of Tilda’s joy, taken on the 30th March 2012. Full of laughter and delight and the wonder of those sparkly shoes.

A year later, she was still laughing but it required much more of an effort, cue my ridiculous opera style singing.

This year, she is not here. And will not be for any of the years to come. It is a shitty, horrible, heart wrenching thing to try and come to terms with. We are so lucky though, to have had her at all.

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4 Responses to “Batten Awareness Day – 31st March”

  1. Juliet March 24, 2014 at 9:29 am #

    Thinking of all of you. Indeed, you were lucky to have her, and her courage and yours have been a lesson to all of us. All my love

  2. jackie March 25, 2014 at 8:25 am #

    Thinking of you all as always. Beautiful tilda who has touched so many xx

  3. Anne Bunting March 30, 2014 at 6:02 pm #

    Thank you Laura for letting us know about the Gsrdening Australia program. We watched it and were both deeply moved and full of admiration for the efforts the lady made in fundraising. You will all be very much in our thoughts tomorrow and we will make a special time to remember all the joy Tilda brought to you all. love always Anne

  4. Louise March 31, 2014 at 6:19 pm #

    Thought of you yesterday and my mind bounced with you today. You don’t really think I am the trampolining type do you????? Will give you a call one day soon to catch up. Not a day goes by that we don’t talk about our classmate Tilda. Love to you all. Xxxxx

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